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Thread: Scared Mom

  1. #1
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    Unhappy Scared Mom

    Has anyone out there had a success story about bracing to avoid surgery? My daughter is 14, with only a 24/20 S curve and pre-menarche...just got brace last week...and this is very difficult for her...this hits t such a hard time, already our girls are inundated with how they are "supposed to look", and now they feel even MORE out of place. My heart breaks every time I think about her struggles, but I know we are doing what we need to do for her now. I am so scared of surgery!

  2. #2
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    Sep 2013
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    Default Re: Scared Mom

    Hi
    I was diagnosed at 13 years old. I wasn't braced I kind of slipped the net with no monitoring so I can't offer advice on bracing. I'm replying because I'm now 39 and in jan this year I had correction surgery after deteriorating a lot in the last three years. I mainly want to say please don't worry about surgery. Yes it's tough I'm not going to lie but young bones and bodies heal a lot quicker and adapt much better than older bones. I'm really happy with my correction. I am still recovering and have some ongoing issues but everything is improving week on week. Good luck with bracing. Anything is worth trying prior to surgery. All the best. X

  3. #3
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    Default Re: Scared Mom

    Teri, thanks for the reply...this is so hard. What degree were you at 13? Why were you not braced, may I ask? Bless you for your support..

  4. #4
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    Sep 2013
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    Default Re: Scared Mom

    My curve I believe was in the 20's. There was no mention of bracing and I think so little was understood about scoliosis then. I was fit and active and had no pain so I was discharged. I had the odd niggle but I was a police officer for 17 years until last sept when I was medically retired. My real probs began after my first pregnancy aged 30. I had some Physio and the pain improved for a while. Then it had my second child three years later at 33. In 2010 at 36 I needed a hysterectomy which meant I wasn't as active and I started to notice a huge increase in pain. I'd seen one specialist after my first child who said your too old for surgery. Your bones are strong the way they are!!!
    Then when I couldn't bear the pain anymore I saw two more specialists. The first in 2012 who I didn't gel with. He said pain wasn't a reason for the op but he would do it for cosmetic reasons as a horrible hump had appeared in my back due to my spine rotating and the spine and ribs dropping. It was affecting every part of me and phsyco logically. My boys were 7 and 5 by ten and my mobility was decreasing rapidly and pain increasing.. Then I asked for a second opinion and saw Mr Ahmed at Stoke. He was amazing. He could see what effect it was having on my life and he was happy to do the surgery. I only really suffered for a few years so I wouldn't have considered surgery sooner. There was no need but Mr Ahmed said they know that scoliosis deteriorates by 2% each year on average and I was at 50%. I'm fused from T5 to L1 so I am still able to bend from my hips. After my op I came round and could feel that I was lying flat without the dreaded hump and that made it all worth it for me. Do they have a long term plan for your daughter??. I'm happy to answer any questions you might have. What area are you from?.
    Scoliosis is hereditary. I don't know where it came from in my family. It's mainly in girls but can affect males too.xx

  5. #5
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    Default Re: Scared Mom

    I'm glad you are doing better, and that you have two babies in your life! Our long term plan is to wear the brace until her growth spurts are done. We are praying this works, because the psychological part is hard going into high school and being on the swim team. ( changing in locker room ). I am praying this will work and looking for the crystal ball, I suppose. Trying to be string for her...and to convince her that this does not define her.

    We are in the US...

  6. #6
    Join Date
    Jan 1970
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    Kent
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    Default Re: Scared Mom

    Hi Scared Mom. I too was a scared mom for a long time! My daughter's scoliosis was seriously huge and she endured 10 surgeries from age 7 to age 10. She is now 3 years post fusion and living life to the full. If your daughter does ever need surgery be encouraged that the young ones really do bounce back quickly. (It was much worse in my head than in reality!)

    Bracing is championed by some doctors and not others. I think that it works for some and not others. The trouble is they dont know who it will work for so they try it on most kids whose curve is below the cut off for surgery (40-50 degrees). I definitely have heard of cases where bracing has worked. Sending lots of love. Xxx
    Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.

  7. #7
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    Default Re: Scared Mom

    Rachie, Thank you - and so much hugs your way too. I cant imagine the fear you must have for so long. I am a faithful person, who is holding on to this strength, which does help. Plus - I have a lot of support with family and friends. My daughter has a mild/moderate curve so far - so we are praying this works. Thank you so much for getting back to me to help my worries. I hear so much that it is always worse in your head than it is in reality. I suppose it is just part of what makes up a Mother! Wouldnt trade it for anything.

  8. #8
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    Default Re: Scared Mom

    You're welcome. That's what we're here for. You can always try searching on the internet for studies on the effectiveness of bracing if you want more information/statistics.
    Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.

  9. #9
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    Sep 2013
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    Default Re: Scared Mom

    Sounds like your daughter has an amazing mother. Good luck to you and your daughter. Take care xx

  10. #10
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    Wink Re: Scared Mom

    Thank you both so much! It's getting easier...if she's good, I'm good. Know what I mean?

  11. #11
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    Default Re: Scared Mom

    Hiya,
    I'm 13 years old and I got a brace 3 weeks ago. my scoliosis is at 43 degrees already. I completely understand about the factor of 'this is how your supposed to look' this was one of my biggest worries. I only told my very closest friends because I was so scared I people judging me but on Thursday I just felt like I was going to pop and I just let it out. It wasn't the reaction I expected at all. People were amazed they found my brace really cool! I'm not saying your daughter should just tell people as it is actually quite hard to do!
    When my mum sees me having a bad day/night with my brace she tried to comfort me one of the things she says to me is 'embrace your brace like your brace embraces you' this makes me laugh because she always gets it wrong somewhere but my point is the only thing you can do for her is to be there when she needs you. Try and make jokes about the brace to each other. But if she is having a bad day try not to take the brace off straight away because when I do this I really don't want to put it back on!
    I know how hard this is emotionally and physically and one thing that actually gets me down about my brace is when people constantly bring it up. I like it when they ask me if I'm ok but say my parents asked me like every 20 minutes I would get upset and more upset with it.

    If she needs someone to talk to or you need someone to talk to please message me.
    Hope this helps,
    Ellen xx

  12. #12
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    Apr 2014
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    Talking Re: Scared Mom

    Ellen, what a sweetheart you are to reach out to me, when you are going through your own battle! I am so impressed with my daughter and you. I agree, it is best when we just get on with it...and not so hyper focused on her brace. I think she told her friends, and I think she was relieved when they didn't think much of it.,(whew!)

    Keep in touch Ellen!

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